Thursday, October 3, 2013

I’m always thrilled when one of my boys shows an interest in his sister. It takes an effort to form a bond, create a relationship, or even share a moment with Elise. Lane was almost 2-years-old when his sister was born, and Ty came along when she was 4. Both of the boys hold memories that have always included her.

It was vital to me early on to make sure to “humanize” Elise for her brothers. Her specific disabilities create a perfect environment for Elise to be completely ignored as a human being. From a baby or young child’s perspective, she can easily be regarded as more of an object, and therefore treated as one. Elise isn’t in on our games of Candy Land, or helping to make cupcakes for dessert. She doesn’t share in their joy of Christmas Eve, or delight in Easter egg hunts. As a matter of fact, her brothers won’t share one memory of Elise’s direct involvement in most family traditions and fun times. Sounds sad, but it’s the truth. Realizing that this would be the case for our boys, I set out to do my best to make sure that Lane and Ty would have some sort of personal relationship with their sister. It would be different, but it would be uniquely theirs.

The best thing about Lane, Elise, and Ty, is that they are not just brothers and a sister by nature, but they are also infinitely tied to one another as brothers and a sister in Christ. We talk often about how Elise was given a soul by God, and they have a firm understanding of His place for her in this world. It touches them where they live. We pray for her, care for her, and learn from her together as a family.

Elise is Lane’s little sister by less than 2 years. They grew up together, and he does not remember life without her. He knew her as a baby, toddler, and little girl. They are close in size, and look alike at times. Lane was there through the hardest of days, and has watched her grow through each of her challenging stages.

He is less hands-on with Elise, but more emotional and empathetic. Wishbones, birthday candles, and personal prayers always hold a place for his sister’s well-being. I don’t think he has ever used a wish on himself, thinking it wasteful not to consider his sister first.

When Lane was about 3-years-old, he became Elise’s spokesperson, an expert in everything “brain injury”. We would be in line at the grocery store, and Lane would seize the opportunity to tell the cashier all about his sister. Nevermind the mispronunciations of “epilepsy”, “cerebral palsy”, and “Cytomegalovirus”, I was just impressed with his eagerness to share his sister with the world.

Elise is a big sister to Ty. For years, he would call her baby sister, confused by the title of “big” and how it was mismatched with her state of being. She was clearly bigger than him in size, but even the smallest of kids notice that Elise is very “baby-like” in her behavior. I never corrected him, and slowly he picked up on the fact that it was he, not she, that was the younger sibling. I have come into Elise’s room early in the morning to find Ty with her, dragging blankets from the hall closet to create a sort of fort around her in bed. Chris and I will often look in the rear-view mirror of the van, and see Ty holding Elise’s hand between his car seat and hers. This gesture is the sweetest of all, because it shows that he cares for her and genuinely desires a closeness with her. It’s hard to form a bond with someone who isn’t involved on the other end. Elise will not reach out for his hand, she will never climb in his bed. He knows this, and takes on the responsibility himself to forge this connection between them all on his own.

Unlike a typical sister, Elise won’t need protection from school bullies or neighborhood taunting. She has no idea what people say or do around her. Instead of protecting her feelings or physical body, her brothers will defend her dignity and identity as their sister. Their protection will have more to do with them then it will to do with her.

Last year, as Lane walked home from school with a group of friends, he was introduced to something that he will inevitably have to face for many years to come. He was talking with a close friend and Elise’s name came up. Most of the kids on our block know her, love her, and are used to her. They are all stared-out, and the mystery that surrounds her no longer holds their attention. She is just Elise.

One of the kids in the group was new to our street, and when he heard Elise’s name, he told Lane, “Your sister is retarded.” Our family finds no fault in that word, it is a true medical term. This kid said it, though, in a derogatory way, emphasizing the word as if it was something to be made fun of. Lane quickly and calmly told this new boy that his proclamation was unnecessary. Everyone was aware that Elise was “mentally retarded” and there was no reason to say it that way. The boy heartlessly replied, “Hey, it’s not MY fault your mom had her that way!”

Lane is very much a peacemaker, and recognizing where this kid was taking the conversation, he decided to end it. God has certainly equipped him to manage himself in these situations by giving him a thick skin when it comes to Elise. Now, Ty is another story. I’m pretty sure there will be a bit more of a commotion when this happens with him. Maybe I need to start working with Ty now on his management of the cruel words from others (Thankfully, they are VERY few and far between)!

We have found that it’s easier to include our boys in all that we know. Even if we had wanted to shield them from the harsh realities of their sister’s life, it would have been a daunting task at best. Her brothers are there as the doctor talks to me about getting a DNR (Do Not Resuscitate) on Elise as a precaution. They hear their dad and I talk with each other and doctors in hushed tones about surgeries, serious concerns, and subjects usually reserved for adults. Not only is it true life, but it’s a constant lesson in the realities of the life of someone who is struggling and needing constant care and love from her family.

I certainly wish that my boys could experience life with a typical sister. One who is in on the backyard play, kicks them out of her room, and forms secret alliances against mom and dad. I had that growing up with my big brother, Brent. We are almost exactly as close in age as Elise and Lane. My entire childhood is littered with remembrances including my brother in good ways and bad. We shared our entire youth, and fought just enough to stay true to the brother/sister rivalry so many of us had in our families.

When it comes to having a brother/sister relationship, Lane and Ty do the best with what they have. Whether they are retrieving a dropped paci, brushing her hair in the car to keep her happy, or hitting her on the head in a restaurant for much needed sensory stimuli, these brothers -- big and little -- are learning. The lessons they receive from living with Elise are priceless.

These two boys have shared a house with a very special young lady who they call “Sissy”. When Lane and Ty are old and grey, I pray that they can get together and share their memories of life in our house during these wonderful years of their youth. I am overjoyed that they will remember Elise as a person, and celebrate her as their one and only sister who will always be uniquely theirs.

Lane and Elise: Then and Now...

Lane seeing Elise for the first time in the hospital.

Lane and Elise were so close in age, that they did a lot of sleeping and laying together in bed. This is something that Ty hasn't done with Elise, because she is too big and active for that now!

Ty found his own way to show love for his sister by holding her hand in the car ALL OF THE TIME! Ty is not a cuddly, sweet little lovey-dovey kid, so this is kind of a big deal to us...

Lane and Elise have "grown up" together, side by side.

Lane has pushed his sister around for her whole life!

Elise is 4-years-older than Ty, so he has had different experiences with her than Lane.

She was the one holding him (and trying to eat his head)...

He has always been the one more interested in her toys and equipment.

Ty pushing Elise in from the bus (with a little help from our friend/caregiver, Jackie)!

He likes to rearrange her bed to make sure she has everything she needs...

It is worth the effort to create memories for these boys with their sister. Even if she can't be directly involved, she can be there, as part of the family.

She dresses up with them on Halloween...

She is with them on Christmas Eve dressed in their pajamas...

She is with them as they walk to school...

She is there at her brothers' Meet the Teacher nights...

She comes along to explore the neighborhood Christmas lights...

She is with them at the church Easter party...

She's with them when the latest kid movie comes out, and scores the roomy seats in the handicap section (we actually make the boys sit in regular seats)...

She's on the sidelines at soccer practices and games year after year...

To show Elise their love, her brothers have:

Held her...

Spent time with her...

Traveled to the park with her...

Helped feed her...

Played doctor with her...

Taken rides in her lap...

Gone with her to doctor appointments...

Walked to Sonic with her...

And even when Elise can't be involved in their play, she is still nearby...

In our backyard with neighborhood friends

Last summer at a local spray ground

Lane's baseball game

Grandparents' swimming pool

Yeah, I think Lane and Ty are going to be fine. They may not have a typical brother/sister relationship with Elise, but you sure couldn't tell them that!

With all of this talk about brothers and sisters, I started thinking about my years growing up with my big brother, Brent. My boys will have different kinds of memories of their sibling relationship with Elise, but I have pictures to capture all the great moments.

(Just like my dad did!)

Warning: These pictures are extremely 70s/80s looking.

This last picture is the closest representation of 90% of my memories with my brother!

If you would like to read an earlier post on the subject of Elise and her brothers, you can go here...